Secondary Liver Cancer - Eventual Liver Failure and What to Expect

Liver, secondary cancer

Secondary liver cancer is cancer that has spread to the liver from a primary cancer somewhere else in the body. This group is for people affected by secondary liver cancer to share experiences and get support.

Secondary Liver Cancer - Eventual Liver Failure and What to Expect

No. of entries: 98 | Posted on 14 Nov 2009 12:36

Secondary Liver Cancer - Eventual Liver Failure and What to Expect

  • Hi, my 63 year old father passed away this week as a result of secondary liver cancer, the primary was bowel cancer (which had also spread to his lungs, though the oncologists regarded the tumours on his lungs with far less concern than those on his liver). He was diagnosed with bowel cancer in 2007, after having almost no symptoms until the 11th hour (he was severely constipated for over a week all of a sudden, which led to severe vomiting, casualty, a hospital stay of two nights and 28cm bowel obstruction successfully removed and the results of the tumour take out were malignant - this was back in Autumn 2007).

     

    Despite having two rounds of chemo over the two years, the first didn't work too well, the second did work in shrinking tumours but my father was taken of it on cycle 8 out of 12 as side effects of the drug threatened to kill him with a life threatening stroke or heart attack - he developed a blood clot on his lung. Signs of this clot were him not being able to lie down on his side one night, and a bit of pain there - though he never described that as agonising so be aware. The oncologist said that was an unusual reaction to the chemo drug.

     

    He then was offered a little hope toward the end of this summer with the potential to go on a drug trial, with a renowned professor, though he was never accepted on this as it was deemed to dangerous in light of blood test results relating to liver function.

    My father spent virtually all of his 2 years with cancer taking the dog on long walks, flying long haul to visit me in New York twice, getting on public transport, walking lots over there, going to the pub to meet his friends for a pint once a week, going on holidays to Scotland doing lots of walking with my mam, socialising with friends and family and retaining his friendly, cheerful, gentleman like demeanour. No tears EVER, no bad moods, no depressing talks or even mention of prognosis, perhaps a little more prone to tiredness than usual.

     

    Fast forward to a month ago, when I came to visit him from NY - he was suddenly out of the blue a lot more tired and exhausted. He'd been taking steroids about 2 weeks prior to my visit and recently come off then. He was also on the blood thinner warfarin which needs careful monitoring. During my stay he was admitted to hospital, with suspect internal bleeding - they though the pain in his side was a result of misbalance of warfarin and perhaps the extreme tiredness as a result of suddenly being taken off steroids. He was immediately put back on steroids, and the warfarin adjusted - but no avail, as he continued to visit the his weekly warfarin clinic they just couldn't seem to get the balance of his dose right and his INR (which measures the clotting ability of his blood) was off the acceptable scale most of the time.

     

    A misbalance of drugs masked the fact that liver failure was taking its effect. The whites of his eyes became slightly jaundiced about 3 weeks ago but just his eyes. As a week progressed his face was a shade of jaundice. He remained his normal self but VERY tired, and took tramadol the pain killer only occasionally (say every two days for a 'stitch like pain that wouldn't go away in his side').

     

    I returned to New York, but last Saturday after knowing my Dad had been increasingly tired received a call from my mother saying Dad had been admitted to hospital. He'd had a bad nights sleep on the Friday night, was a little disorientated and on Saturday afternoon when the on call GP reached him at our home he failed a basic coordination test which involved aligning his hands together - the doctor said it was best to admit him into hospital for tests.

     

    Dad was admitted to an 'acute care ward' as it was a weekend. I've since heard if it had been a weekday, they may have admitted him into a hospice for a night or two for assessment instead. He had a side room, and was the sickest on the ward by far - everyone else was in wards and were able to hold cups by themselves, talk in full sentences and achieve some sound sleep but not my Dad. By Saturday he was writhing on a bed grabbing the cot sides in pain, he was still talking but with one word answers or very short sentences. By Sunday I was on route to the UK on a plane, meanwhile my mother stayed up all night with my father as he was deteriorating so rapidly, he was down to one word answers and had to use a bedpan for the bathroom or a commode - he was bedridden. He was still taking his medication - steroids, pain killer, anti indigestion etc orally - they were all syrups and able to eat very soft food, like soggy wheatabix or ice cream which was one of the few things he seemed to enjoy at this stage.

     

    I arrived on Monday morning at 8am, I took a deep breath and walked into his hospital room. He slowly, slowly turned his head to look at me, his eyes were deep yellow and his skin was a definite yellow, his face a little bloated and the dejected, fed up look in his expression was one of the most remarkable things. I'd never seen such suffering in a man right before my eyes in my life. I held it together for him, as I was conscious not to heighten any anxiety I'm sure he must have felt, told him I loved him and my Dad reach out to hug me and said 'good' in reply. He was totally lucid just so exhausted he was unable to express himself or his wishes properly.

     

    As the day progressed my mother went home, leaving me with Dad as she had to urgently let the Macmillan delivery guys into our house to deliver a hospital bed, a commode, a table for a patient to eat off. It took until 5pm for the special ambulance to arrive and for his drugs to come from the pharmacy for him to be discharged. He was sent home with drugs suitable to administers via a syringe driver, for when he wouldn't be able swallow. The discharge process was a mess. He had a yellow prescription chart for the drugs for the driver which we had to take home, it had to be signed off by a Doctor - so a district nurse visiting our home could simply fit the syringe driver whenever my father reached the stage of not being able to swallow drugs orally. The nurses at the hospital checked over the form and said it was good to go - but we later discovered it wasn't, there was a second section which hadn't been signed off by a doctor.

     

    After eating tiny spoonfuls of yoghurt on Monday evening and having deep sleep on Monday night, when my father 'woke up' (he wouldn't open his eyes and was in a semi coma, though he did scream out when carers handled his severely swollen legs to wash him) Most significantly he was unable to swallow drugs orally, and I had to waste a lot of time with phone calls back and forth to my GP's surgery to get district nurses out to him immediately (I was told to ring the nurses direct myself, the nurses told me for them to arrive as an emergency the GP had to dispatch them..) After time wasted with these calls the nurses arrived to tell me they could only count the drugs and could not administer them until the doctor arrived. Fortunately I made the judgement call to get the on call Doctor out as an emergency in addition to this, as I mentioned to her on the phone his breathing was becoming laboured and that we were NOT achieving the goal of making sure he was comfortable. It was around midday and he'd had NO medication just a droplet or two or oramorph the pain killer. The doctor arrived and completed the incomplete prescription chart. The driver was fitted, with the syringe in my fathers hand. I was told as it was subcutaneous it would take around 30 mins or so to kick in and the drugs given were a sedative (which I was most concerned with as I hated the thought of him panicking about dying and what the next step after death is), morphine for pain and anti sickness drug. The nurses and doctor left about 20 minutes later, and after a few moments my father opened his eyes for the first time that day and just stared as if unable to focus. My mother and I were holding his hands, kissing him, telling him he wasn't alone ever and how much we loved him. He then shut his eyes again and took his last few breaths, very peacefully..and that was the end.

     

    This is a long story and still so fresh. His funeral hasn't even happened yet. I've learnt so much from it though and in short, I'd say that a most of the time liver failure will eventually become evident where a liver secondary is concerned.

    First of all when jaundice comes, this is a sign of a build of a the waste product bilirubin in the blood, which the liver normally expels into the bowels - giving poo a brownish red colour. Poos become white, whilst eyes first then skin takes on a yellow tinge. Urine will become red looking, as if blood is in it - but the strong colour is the bilirubin. When these symptoms show, this means liver failure is already very WELL advanced. Dad was becoming exhausted complaining "I just want my energy back" - he didn't want to drive his beloved car or even get out of the car for a breath of fresh air when my mam drove to the beach to let the dog out. He couldn't manage a walk around the block, where as he could 2 weeks before he died. Severe tiredness is also a sign.

     

    Then comes acute liver failure, at this stage Dad was becoming a little confused but remained totally lucid - the confusion was very subtle in his case - he'd ask the same question twice in a short space of time and went into the wrong bedroom after getting up for the toilet in the night (though my Mam had just swapped his bedroom to another room earlier that evening, so again subtle signs of confusion).

    Eventually my Dad simply became too weak to talk, walk, sleep properly, eat or drink. He went from walking talking eating and drinking to being bedridden writhing in pain, unable to talk in a matter of 4 days. I also think he may have hung on longer suppressing his pain and demise waiting for me to arrive from the USA to see him. He was so brave in the face of it all and considerate to the end, looking pleased saying 'good' when I told him my mam and me were going to have a lie down after 2 days of no sleep the night before he died.

     

    His legs were very swollen and so painful to touch he cried out when he was moved. He writhed around a lot unable to get comfortable and clung onto much needed cot sides of the hospital bed. The bed delivered to our home didn't have cot sides so we had to line up two arm chairs against it to stop him from falling out and my mam broke down in tears holding his swollen legs. I forgot to mention that only my mam and I were with him at home during discharge, I am in the third trimester of pregnancy and we were left alone with him at home in a state of discomfort until district nurses arrived at 8pm. Fortunately my uncle who's a GP arrived earlier and helped reposition him - you need 2 able bodied people to move and reposition a 12 stone sick man - you don't realise how much they writhe around into uncomfortable and potentially dangerous positions.

     

    A consultant told my mam my Dad was dying on Saturday night but why a Macmillan nurse was not with us to over see his discharge I don't know. Our Macmillan nurse was lovely, but she came after my father passed away - about 30 minutes later. The Monday night before my father's death, he was watched by Macmillan carers NOT qualified nurses. They were lovely women - but it was so close to the end someone should have been on hand to inject him with a pain killer if needs be.

    There was a big boo boo with his yellow prescription chart for the drugs administered by the syringe driver - no one took ownership over my Dad's case on the acute care ward at the hospital, and though some staff were exceptional - others were a little clueless tending to talking eating drinking patients in a communal ward, before my dying father in a side room alone with his pregnant daughter. He couldn't talk or eat properly, or drink without a baby's cup being held up to him. Some nurses just didn't use common sense or experience to set their priorities straight.

     

    So my advice in short to anyone caring for a patient with a liver secondary which is terminal is:

     

    Don't focus on prognosis -there are so many good times my Dad and I had while he had cancer, it didn't stop him from being him and enjoying life until right up until the end really ( I mean 3 weeks before his death).

     

    Look out for any signs of liver failure - I mentioned them earlier such as the jaundice etc. When this comes you know the end isn't in the distant future - I'm talking weeks. At this stage be brave and get Macmillan and your assigned nurse as heavily involved as possible.

     

    Look out for signs of acute liver failure - severe tiredness, the onset of which seems to happen quickly, very subtle signs of slight disorientation or confusion. It may just be being slower in response to questions or sounding unenthusiastic and a lot quieter than usual on the telephone etc. At this stage go through a checklist of equipment in your mind - you will want your loved one to be comfortable at home at the end and you will need things like:

    a baby beaker to drink

    straws

    oral syringe

    A large plastic washing up bowel to fill up with hot water to wash patient in bedside.

    New Sponges

    At least 3 new sheets for a single bed, patient is most comfortable with thin sheets.

    2-3 fitted sheets for a single bed.

    Clean towels.

    Baby Wipes.

    Antiseptic Wipes

    Dentyl Alcohol free double layer mouthwash (helps with oral thrush common at this stage) - don't bother with this during the very later stages, you don't want the patient to swallow it.

    Pineapple//Orange Juice

    Ice-Cream

    Favourite Foods

    Bottled water Still

    Little sponges on sticks to dip in water or pineapple juice to freshen and clean the mouth - district nurses

    a bed pan - district nurses provide

    catheter tubes - district nurses

    Incontinence pads - district nurses

    Ask Macmillan social worker about ordering a hospital bed WITH COT SIDES (essential), a commode and table to eat off that hangs over the bed, in advance.

    Think about close family members that the patient would take comfort in having bedside for this harrowing experience. Deterioration will last not much longer than a week if acute liver failure sets in - although all patients are different, it's a given that liver failure can be as quick as 48 hours in some cases.

    As signs of liver failure progress, to pain and restlessness you will need 2 able bodied adults to be present at all times to reposition and help lift the patient.

    If a patient is in hospital or a hospice - you will need 2 able bodied adults to help settle the patient into their home on the day of discharge. If you don't have family or friends suitable for this very personal close experience, contact Macmillan and say you would like a nurse plus at least one carer present. Be pushy and adamant about this - your job is to hold the patients hand and reassure them, otherwise you'll be running round frantically making calls, searching for equipment and struggling to move the patient compromising their lovely of comfort and your precious time with them during their final days.

    I'd try to source most of the equipment in private in advance so patient doesn't know, but it's important to have your house well stocked as deterioration can happen overnight and take you by surprise. Also think well in advance about rearranging your house. We didn't want to move furniture until last minute for psychological reasons - we thought my Dad would think we were assuming he was ready to die if we put a bed downstairs too soon. However, I wish we'd moved furniture in advance to make space for a bed, even if the bed wasn't there until later on.

     

    Finally, before patient is discharged from hospital the most important drugs are the drugs for the syringe driver. As it is a given that eventually patient will not be able to swallow eventually. The syringe driver drugs are in boxes and they come with a YELLOW PRESCRIPTION CHART WHICH YOU SHOULD PRESENT TO A DOCTOR OR HOSPITAL PHARMACIST TO ENSURE IT HAS BEEN PROPERLY SIGNED OFF FOR (otherwise when you're panicking because patient is in pain and unable to swallow at home, district nurses will not be able to give the drug unless it was signed off for - this could leave a patient in pain for 30 mins or more waiting for an emergency on call doctor to arrive to sign a piece of paper). A high level nurse told me our yellow slip was adequately signed off for in the hospital but it wasn't.

     

    It is well worth noting that my Dad was lucid until the end

     

    This is such a long post but it's a reflection of just how much there is to coordinate near the end and how important it is to be proactive and anticipate it YOURSELF because Doctors nurses, and MacMillan nurses won't do it for you. They will not spell it out or commit to saying how quick it will be, as yes it's different for the individual. You do not want to be left vulnerable, MacMillan nurses can be really helpful but you need to chase this help, it is not readily available and largely depends upon factors such as how efficient your social worker is and if he/she has good foresight and can handle a busy schedule with an air of control. Beware that YOU will be assessing the situation and making important judgement calls yourself. Make it clear if you don't have home help and demand it, don't be proud.

    he could hear but couldn't express himself - of this I'm 110% sure - so make sure you remind nurses, family, friends and any carers of this so they do not talk about death, the 'Liverpool Care Pathway' (which is a system of drugs and procedure regarding not resuscitating patients at deaths door etc) or anything undignified such as patient being unable to go to toilet properly in front of the patient. I'm sure anxiety over death and remaining dignified are 2 key factors during this stage. Anxiety over death/being separated from loved ones to me is worse than anticipation of pain.

     

  • Hi,

    just read your very moving story.....I hope you're ok?....you were very brave to write such a personal journey  about your Dad. The information you have given however will be useful for other carers.....& families.

    My Mum had a tumour removed from her bowel in January, like your Dad wasn't really ill before....she'd lost weight ( we put that down to her caring for my Dad who is also very ill ). She was  also constipated, but that was all.

    She suffered a hematoma on the wound, five days after the surgery. She was doing very well, she had her first drip of chemo, weekend of 3 days of steroids and 9 days of chemo steroids. Four days after the drip, she suddenly "flipped" was aggressive, said awful things....after I'd had her staying with me for 6 weeks.....she went home to hers and two days after that had the bleed in her head!. Now her oncologist say the chemo & bleed isn't related?!!....my Mum isn't convinced.....she was in hospital for a week & came back to mine a week ago. She's had her second chemo drip & again 4 days later she got aggressive again ( she isn't on steroids, so can't blame them ).

    She is weaker, slower & some days  looks very ill. Tonight she's had a glass of red wine & quite perky!.

    I feel we don't know enough about the chemo & I'm going to look into that. The day my Mum was in theatre having her op, my Dad was staying with us & he has a long medical history of heart problems. His Difibralator shocked him so badly he was lifted off his feet & he's been in hospital 10 wks!, he is going into a nursing home next week ( a very good one, as some are dire! ). I can't look after them both as much as I would like to.....

    Reading everything you said, I will read again.....I really hope you are feeling ok, I know the pain, loss, trauma, etc must still be with you....but  I hope each day you feel better about everything.......I can't imagine how you feel, but I'm thinking of you.....

    take care,

    Tina x

     

     

     

     

     

     

     

  • Hi Jess

    I have just joined this community because my dad has secondary liver and lung cancer from bowel cancer and I have just come home to help my mum look after him in the final weeks or months. I really wanted to know what to expect so that we are prepared and can note the signs. Your post is extremely helpful and I've taken notes of the key points. I just wanted to say thank you so much for your openess and providing all of this info, it's extremely helpful, and I am sure that many others will also benefit from it. You've certainly provided support and comfort for me, and for that I am so grateful. I hope that you and your mum are doing ok and send kind thoughts and best wishes your way.

    Rosie

  • Thank you for your very detailed and moving account. I know you wrote it a long time ago now (does it feel like that?) More than 6 months anyway. I hope everything went wel l with the baby and he/she is healthy and happy. My mother is in an advanced stage of secondary liver cancer - still at home being cared for by my 83 yr old father - she is 66. It was very useful to read the timescales of your story to give me an idea of what to expect and when. My mothers' brother lives abroad and it is very difficult to tell when he should come over.

    Sending you very best wishes shonashaw

  • Hi guys thanks for all the kind comments - you taking the time to reply means a lot to me, I  wrote that days after my father's death and I was heavily pregnant and so emotional... I remember offending quite a few people with it's candor then trying to delete my macmillan account after. I only meant to help and maybe it was too detailed, but as you can guess it was therapeutic for me to let it all out in that post in the aftermath of my father's death, I just felt I wanted the very best for him from the NHS - what he deserved and that his hospitalization and discharge should have been smooth sailing. I have a baby now, Anderson, he was born shortly after my father's death and was 8 bs 4 oz boy... he's big for his age now and coming along nicely. My baby looks very like his father, but I'm hoping he will have my father's wonderful personality and intelligence.I'm back in New York with my husband missing my mother terribly as well as other family in the UK, the plan is that we will move to Florida and get a large house with a garden and pool, and my mother will come live with us for 6 months at a time. We'll try to make the move in 2011. I'm also broody for another child already, I want a sibling for my boy...but I want to get my pre-pregnancy figure back and maintain for at least a year first, I've got 30lbs to go so I better get running! I plan on studying nursing when my child is one, Im at home with him now..I was managing snooty restauran in NYC before my father died but his death has put a lot of things in perspective for me and I decided I want a 'real career' where the people are more deserving of my help and well nursing is personally rewarding. I plan on going into palliative care or anesthesiology. Please everyone on this site, with family with bowel/ liver/ung cancers...or any cancers friend me and stay in touch. If I can recall anything I've learnt along the way with my dad's experience to help I'd love to and of course I also now have an extra interest in  this terrible disease as I'd like to go into nursing. take care everyone and stay in touch xxxx

  • Hi Jess

    Sorry you got some negative comments, that's a real shame. I thought your post was great for it's honesty, and has helped me a lot. I have also found that the NHS has not been so great... there seems to be a lot of bureaucracy that gets in the way... we had a situation where the hospital was supposed to fax an order through to our GP for meds my dad needed desperately, only to find they hadn't done it. Our GP office was not very helpful and told us we had to get back in touch with the hospital, and it took a couple of days to sort out, all the while my dad was without his meds. I have to say though that since Macmillan have got involved things have been better, our nurse is helpful and sorts these things out for us, rather than me and my mum getting the run around.

    Dad is starting to detiorate and is very tired and now can hardly walk due to pain in his hip... this may be the cancer spreading or just a bad case of arthritis, but he never had arthritis before. I've noticed he looks a bit yellow some evenings, but nothing too bad as yet. Still I realize it can't be long now, and I cherish every moment he when he is old self again.

    Congrats on the birth of your baby boy! I am sure you will see aspects of your dad coming through as he grows up, and it will be a joy to you. And good for you for going into nursing, it will be such a rewarding career and your dad would be so proud.

    Thanks again and all the best!
    Rosiep

     

     

  • Thankyou so much I have had so many questions I had , answered in your post.The very best of luck in your chosen career after all who better than someone who has been through these times to be there for others.xxx Julie

  • Hi Jess, my mum (who turns 81 next week) has bowel cancer and secondary liver cancer which has spread to the adrenal glands, possibly the lungs.

    Some short term memory loss set in a couple of months ago but she is independant (or at least has been till a few days ago).

    My mum lives alone and my sister and I live up to 2 hours away in different areas. In the last week we have seen a deterioration (more symptoms and pain/discomfort) and today having called the dr out (by phone as we're not with her at the moment) as she had pains down her right side which are not improving, the doctor said she had 1-2 months to live (we had pushed him as the hospital and oncologist last week wouldn't give us any information although they must have known the degree of deteriioration and prognosis. We had got the hospital (colerectal nurse) to make a referral to get her some support at the start of the week and today the GP was calling the palliative team and adult care services.

    It's very difficult knowing who you go to for what and hopefully something will be put in place quickly though how the logistics work we don't know.

    The other posts have been helpful in identifying what to expect but not living with her it's so hard to know what to do.  I had a feeling things were getting worse but nothing prepares you................

    Hope you are managing.

  • Hi

    I had a really similar experience to you with my Mum who was just 83 in April(but always told us she was 38!)Sadly my Mum finally succumbed to the cancer about 2 weeks ago and I am coming to terms or trying to with her not being here.

    Like you I didnt really know what to expect and had read Jess's post with a mixture of fear and interest.However I believe its a very different experience for everyone as we suffered none of the trauma that Jess's poor family went through.Mum reamined independent to the last day and although it was sooner than expected it was very peaceful and I was glad to be with her and able to hold her hand.I live the closest and thats 450 miles away but was visiting regularily.

    I think the thing I noticed with my Mum was that she became less interested in battling on,she had a bit more pain and on the second to last day severe pain which was alleviated by a small dose of morphine.Mum was able to swallow right up til two hours before she passed away,but she did find it difficult.She had withdrawn quite a lot in the few weeks before and only wanted to talk to close family.She was extremely fatigued.

    We hadnt even got a Mac nurse as things were quicker as I said but had a great district nurse who got everything we needed-which in our particular case wasnt much.

    As I said I think each person has a different time leading to the end.Its so very very hard when you are not there,i really understand.My advice would be to go as often as you can.As she is alone you may want to look into hospice or outreach hospice care.We wanted Mum to stay at home if she could and we were lucky in this respect.

    Wishing you all the best at this incredibly difficult time.If theres anything else I can help with let me know.

    Will

  • Hi

    I had a really similar experience to you with my Mum who was just 83 in April(but always told us she was 38!)Sadly my Mum finally succumbed to the cancer about 2 weeks ago and I am coming to terms or trying to with her not being here.

    Like you I didnt really know what to expect and had read Jess's post with a mixture of fear and interest.However I believe its a very different experience for everyone as we suffered none of the trauma that Jess's poor family went through.Mum reamined independent to the last day and although it was sooner than expected it was very peaceful and I was glad to be with her and able to hold her hand.I live the closest and thats 450 miles away but was visiting regularily.

    I think the thing I noticed with my Mum was that she became less interested in battling on,she had a bit more pain and on the second to last day severe pain which was alleviated by a small dose of morphine.Mum was able to swallow right up til two hours before she passed away,but she did find it difficult.She had withdrawn quite a lot in the few weeks before and only wanted to talk to close family.She was extremely fatigued.

    We hadnt even got a Mac nurse as things were quicker as I said but had a great district nurse who got everything we needed-which in our particular case wasnt much.

    As I said I think each person has a different time leading to the end.Its so very very hard when you are not there,i really understand.My advice would be to go as often as you can.As she is alone you may want to look into hospice or outreach hospice care.We wanted Mum to stay at home if she could and we were lucky in this respect.

    Wishing you all the best at this incredibly difficult time.If theres anything else I can help with let me know.

    Will   

  • Thankyou Will, I must say your mums journey sounds like what I would wish for Auntie Jean , we still take each day as it comes ,even had a lovely trip to the garden centre today.Had a zoldrenate infusion yesterday for her bones , so no more hospital visits for 2 months. Thankyou so much for your time .xxx

  • Thanks Will, I was so sorry hear to hear about your mum. My thoughts are with you.

    You're right everyone's situation is different.

    We're currently at the stage where although mum is independant (lives alone) her pain and symptoms seem to fluctuate day by day.  A referral by the hospital has put a carer in place 3 times a day (who often only has to have a chat with my mum) a district nurse (a differernt one just turns up whenever and doesn't seem to do much) and a MacMillan nurse. We were told the carer would be the eyes (as my sister and I live 1-2 hours away) and aren't up there everyday and all would liaise with the Dr (a family Dr of over 25 years).  It In reality it just doesn't seem to work. In fact today I was up at my mum's and because she had some problems last night and I needed some adviceI rang the Dr.  He aksed me if she was on codiene based tablets I politiely (yes I was polite but firm) told him shouldn't he have the perscription list. It only seems if he's prompted that'll he'll consider coming round to see my mum so doesn't seem to really know the overall picture.  Being miles away it's difficult to know if she's moving into the next stage of deteriroation as no one seems to have any continuity.

    She has primary bowel cancer, secondary in the liver (which has doubled in size since Nov) now spread to the adrenal glands and possibly the lungs.  She does get quite confused and her memory is very bad except people who see her see a well presented articulate women who deosn't appear confused.  Yet as soon as they are gone she may not remember they've been or what was siad. We just don't know what to look out for or what the triggers are to be concerned especially as a recent prognosis was apporx 1-2 months. Can anyone help. ?

    Thanks again Will for your repsonse, take care.....

    Shaz x

     

  • Hi again

    glad the info was of some use to you both.

    Shaz,your Mum sounds just like mine,and all the goings on with doctors who dont seem to have enough time.My Mum did also get confused towards the end but she usually managed to hide it and we knew things were bad when she didnt put on her lipstick.

    I was desperately worried about the timeframe and I think when you dont live near like us then you do become more concerned with this.My journey involved either 9 hours on a train or a flight and I had planned to go up to see Mum as many weekends as I could.For me this was important,it meant I had quality time with Mum on my own.I had to juggle a lot to get there but it was worth it.

    Like your Mum,mines was bowel primary mets to liver.Like yours they had more than doubled in 6 months.My last visit which was when my lovely Mum passed away was supposed to be one of many to happen over the next couple of months.

    When I arrived Mum was on a small dose of morphine.The previous night she had been in a great deal of pain ,more than ever before and it was the first time she had taken morphine.She was awake and greeted me with joy but was a bit woozy.The doc was there so I went to have a few words with her and was told timeline was still weeks but with no guarantees and that the next 48 hours would be crucial.She would either get back to normal or go downhill.

    I spent most of the day in and out of her room.She was in a kind of trance when awake but always very comfortable and not wishing to be fussed over.She did pull herself out of the trance to speak but not much and I think I felt something was amiss.

    At about 10pm the GP phoned to see how she was,but said it would not still be morphine affecting her that would have long gone from her system.A nurse was sent to check her and we tried to get Mum to use the commode(she hadnt needed one before that).Her legs were swollen thats something to watch for,and like Jess'sDads were painful to touch.She wouldnt or couldnt go to the loo(I think constipation is also something to watch for),so the nurse rearranged her bedding a bit and made her comfy.She kept saying'dont worry darling,Im alright,dont worry'.My Dad has been caring for her and he and my Mum went to bed.I kissed my Mum goodnight and she thanked me for coming.I told my Dad to get me in the night if necessary.

    My Dad woke me at 4.30,my Mums breathing was rattley as if she should cough.We managed to get her to sip some water but she was not responding much.Her eyes were open as if in a trance.I called the nurse who came straight away.She checked my Mums feet the bottom of them were a bit blue and she told us Mum was dying.She said it would be within 24 hours.The rattley breathing continued and me and Dad held Mums hand.However she was never uncomfortable with it.Her breathing became quieter and quieter until it stopped.It all happened in a couple of hours.Im crying as I write this but had Mum gone on she would have been catheterised and hospitalised which she would have hated so it was better for her that she went quickly.

    I think the docs find it so unpredictable which is why they are vague with time.I had fully expected to be visiting again,but it wasnt to be.

    Its very hard to come to terms with and Im struggling a bit.In the end Mums passing was quite peaceful and Im so grateful for that.I will always miss her.

    I hope my story doesnt make you worry.I think I was very worried about what was going to happen but in the end our coping mechanisms kick in and we manage to get through these ordeals.

    Sorry to have gone on a bit.Good luck to you both.

    Love Will

  • I think from reading your responces and your story,I can tell your mum (and Dad) raised a very lovely caring son I bet they were very proud.

    My auntie is at the ok stage at the moment and we take every day as it comes.

    You are right about the coping mechanism my Dad was my world and as they were older parents having had me in their 40's I always feared losing him. I lost him to prostate cancer in 2001 and would never have thought I would cope during or after his illness. Good old mechanism.  All the best Julie.

  • Oh Will, I was crying with you when I read this, so gald you were able to be with your mum at the end.

    Your reply has allowed me (along with other internet reading) to know some signs and in the meantime it's taking each day/ week as it passes at a time.

    I'm going up as much as possible to my mum's and speak a few times each day.  Sometimes it's hard to believe, we all kow we're going to die at some time but when you know someone close to you is dying and you don't know how long you want them to be able to enjoy life with little or no pain.

    Take care, speak again soon. As I've only just joined the site I'm sure I'll be keeping in touch as things progress.

    Love Shaz